What is ME/CFS?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), sometimes called ME, is a condition that affects multiple areas of the body. It causes long-lasting, extreme exhaustion that doesn’t get better with sleep. Other symptoms may include dizziness, pain, and problems thinking and sleeping. People with ME/CFS also have a symptom called post-exertional malaise (PEM). This means their symptoms get worse after thinking or moving.
Many people with ME/CFS feel so sick that they can’t leave their beds or their homes, making it difficult to manage everyday life. But researchers are actively studying ME/CFS—providing hope for better ways to diagnose and treat the condition.
Kate's Story
Kate first got sick when she was 11. When she didn’t get better after an infection she got at school, her doctor diagnosed her with tonsillitis and prescribed an antibiotic, which didn’t help her symptoms.
Over the summer, Kate felt better, and she went back to school in the fall. Not long after, she got sick again. A doctor diagnosed her with an unusual type of pneumonia caused by an infection from bacteria. When antibiotics didn’t help and she was not well enough to go back to school, doctors diagnosed Kate with ME/CFS.
ME/CFS made Kate exhausted after doing very little at all. She also had pain in her neck, head, and chest, could not think clearly, was sensitive to light and noise, and felt sick all over. She had to be homeschooled and could only handle three subjects. Even that was a struggle.
Kate is now 33 years old and still sick with ME/CFS. Over the years, Kate and her healthcare team have tried many different treatments, but none have cured her. Kate has a daily routine, but any new activity must be planned ahead of time to prevent her from feeling even worse. Kate lives with her parents, and it would be hard for her to manage everyday life without their help.
Symptoms of ME/CFS
People with ME/CFS can have a lot of different symptoms. These symptoms can also change over time, either getting better or getting worse. But all people with ME/CFS have the following symptoms:
- Extreme tiredness limiting physical activity that has lasted for more than six months
- Feeling much worse after moving or thinking, called post-exertional malaise (PEM)
- Waking up feeling tired even after getting enough sleep
People with ME/CFS also have one or both of the following symptoms:
- Problems thinking or concentrating
- Dizziness or fainting when standing or sitting up, called orthostatic intolerance (OI)
OI is common for people with ME/CFS. It happens when the body has trouble controlling blood pressure and heart rate when a person changes positions or stands still for too long. OI can cause dizziness, lightheadedness, or a heartbeat that is too fast.
Other symptoms of ME/CFS may include:
ME/CFS affects people differently, and symptoms can change over time. Some people feel better but still need to take things slowly to avoid feeling worse after moving or thinking because of PEM.
People may feel better for a while but then have a flare-up, and some symptoms can get worse. Compared to adults with ME/CFS, children and teens are usually more likely to recover partially or fully from the condition.
Michelle's Story
It took four long years for Michelle to get answers about her puzzling and disabling illness. Everything started with a sudden high fever of 104 degrees and several other symptoms. She felt tired, had trouble thinking clearly, had pain in her joints, and felt worse after moving or thinking.
As time passed, Michelle got new symptoms, including dizziness, constant ringing in her ears, rashes, and shaking. She went to many different doctors who did many different tests, but none provided a diagnosis. Michelle felt like some doctors blamed her for her illness, leaving her feeling alone and hopeless. Finally, a doctor who treats hormone problems (known as an endocrinologist) diagnosed Michelle with ME/CFS. But getting her other doctors to recognize and try to manage her diagnosis remains difficult.
Michelle’s ME/CFS symptoms have made everyday life hard to manage. At times she couldn’t get out of bed, couldn’t eat solid food, and was always in pain.
After years of living with the condition, trying different medicines, therapies, supplements, and changes in daily habits, Michelle is only half as active as she used to be. What bothers her the most is not being able to think clearly, persistent pain, and feeling worse after merely moving or thinking.
Michelle can now enjoy short outings, but she keeps her limit to 5,000 steps a day and often uses a wheelchair for longer distances. When she has to stand for a long time, she takes breaks to rest. To avoid having symptoms, Michelle has to think carefully about every choice she makes, like running an errand or going to a family event.
Who is more likely to get ME/CFS?
Because ME/CFS is often undiagnosed, experts don’t know exactly how many people have it. Anyone can get ME/CFS, but it’s more common in women and teenagers.
Different things can trigger ME/CFS, including a mix of one or more of the following:
- Infections: Most often, ME/CFS starts after an infection (from either a virus or bacteria). Many people develop ME/CFS after infection with the Epstein-Barr virus (the main cause of mononucleosis, or “mono”) or SARS-CoV-2 (the virus that causes COVID-19).
- Immune system changes: In people with ME/CFS, their immune system doesn’t work right. White blood cells may be weaker, the body’s response to injury or illness (known as inflammation) may be overactive, and the immune system may mistakenly attack healthy cells.
- Sometimes people with ME/CFS have a major life event just before their ME/CFS symptoms start, like an accident, injury, surgery, childbirth, or strong physical or emotional strain.
- Scientists who have studied how people with ME/CFS respond to physical activity have learned that their bodies have trouble turning oxygen and food into energy to move.
- Genetics: ME/CFS can run in families. Variants (also called mutations) in a small group of specific genes may also cause ME/CFS. Variants in multiple genes may affect the body’s response to infection or chronic (long-term) pain.
- Non-genetic physical, social, and environmental factors that people in the same household share can also affect who gets ME/CFS.
How is ME/CFS diagnosed and treated?
Diagnosing ME/CFS
Because no single test can diagnose ME/CFS, doctors make a diagnosis by carefully reviewing symptoms, medical history, physical exam findings, and test results, and by ruling out other possible causes. They may also refer a person to specialists to check for other conditions with symptoms like those of ME/CFS. Those specialists could include neurologists, rheumatologists, cardiologists, endocrinologists, sleep specialists, or infectious disease doctors.
Learn more about neurological diagnostic tests and procedures.
Treating ME/CFS
Currently, there is no cure for ME/CFS. But many treatments can help relieve specific ME/CFS symptoms:
Post-exertional malaise (PEM)
A person with ME/CFS can pace themselves by carefully balancing activity and rest. Pacing can help avoid PEM flare-ups (sometimes called “crashes”). Keeping a diary of symptoms and when they happen can help people learn how to pace themselves. Some people with ME/CFS use wearable devices like smart watches or fitness monitors to track activity and heart rate, which may also help pacing and avoiding PEM.
Pain
Doctors may offer over the counter or prescription pain medicines to help people with ME/CFS who have headaches or pain in their muscles and joints.
ME/CFS pain may also be reduced with gentle stretching to loosen muscles, simple strength exercises to keep muscles active, massage, heat, and warm water therapy to help a person relax and move more easily. Some people with ME/CFS get relief from acupuncture.
Mental health
Living with ME/CFS can be challenging, and people with the condition may also have depression, stress, or anxiety. These conditions can often be helped with medicines, counseling, deep breathing, muscle relaxation, massage, yoga, and tai chi. For people with ME/CFS who have trouble with memory, reminders and organizers can make daily tasks easier.
Orthostatic intolerance (OI)
People with ME/CFS who have OI may need to see a specialist, like a cardiologist or neurologist. These doctors can help rule out other health conditions that could cause similar symptoms like dizziness, lightheadedness, or feeling faint when standing.
If symptoms keep happening but the person doesn't have a heart or blood vessel condition, a doctor may suggest drinking more fluids, increasing salt consumption, and using special socks or wraps that gently squeeze the legs.
Other strategies for managing symptoms
Rehabilitation specialists, physical therapists, or occupational therapists who are familiar with ME/CFS can help people adjust to daily living with the condition. For example, they may recommend finding ways to make activities easier, such as sitting while doing laundry or showering, taking frequent breaks during the day, and breaking up large tasks into smaller steps.
What are the latest updates on ME/CFS?
The National Institutes of Health (NIH), which includes NINDS, is the leading federal funder of research on the brain and nervous system, including disorders such as ME/CFS. NIH supports new and innovative research to better understand, diagnose, and treat ME/CFS.
Many scientists are trying to better understand ME/CFS so they can diagnose and treat the condition better. NIH has developed multiple working groups to address ME/CFS. The Trans-NIH ME/CFS Working Group, formed in 1999, brings together NIH staff to support and share research on ME/CFS.
The NANDS Council Working Group, formed in 2018, helps guide ME/CFS research. Based on a report by the group, the NIH began developing a plan to identify the best research strategies for people with ME/CFS in 2022. In 2024, the working group, along with many different researchers, doctors, advocates, and people with ME/CFS, created the ME/CFS Research Roadmap(pdf, 3436 KB) to guide future research. The report highlights eight important areas: the nervous system, immune system, metabolism, genetics, chronic infections, physiology, lesser-studied conditions, and circulation.
NIH has also formed the ME/CFS Research Network. Along with Canada’s ICanCME network, the network is studying the causes of ME/CFS and developing better treatments.
NIH also funds clinical research to study ME/CFS. Researchers with the NIH Intramural ME/CFS Study learned recently, in 2024, that infections may trigger immune system problems that lead to chemical changes in the brain, causing ME/CFS symptoms. The chemical changes were different in men and women. These findings point to possible new treatments targeting the immune system or brain communication and may also inform research on other infection-related chronic diseases.
Another recent NIH-funded study found that people with ME/CFS have different types of gut bacteria—microorganisms that live in the digestive tract and help the body digest food—that may help diagnose ME/CFS as well as increase understanding about how changes in the digestive system affect ME/CFS.
NIH-funded research also studied PEM among people with ME/CFS. In this research, people with ME/CFS shared their PEM experiences including what triggers symptoms and how they try to manage them. By working directly with people that have ME/CFS, this research builds understanding of PEM based on how it directly affects people, helping guide future research.
For more information on research about ME/CFS, check NIH RePORTER, a searchable database of current and past research projects funded by NIH and other federal agencies. RePORTER also has links to publications and resources from these projects.
For research articles and summaries on ME/CFS, search PubMed, which contains citations from medical journals and other sites.
For more information on ME/CFS from NINDS, check Frequently Asked Questions about ME/CFS Research, ME/CFS resources, announcements, publications, events, and funding opportunities.
How can I or my loved one help improve care for people with ME/CFS?
Consider participating in a clinical trial so clinicians and scientists can learn more about ME/CFS and related disorders. Clinical research with human study participants helps researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.
All types of study participants are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities. This helps make sure that study results apply to as many people as possible and that treatments will be safe and effective for everyone who will use them.
For information about participating in clinical research visit the NINDS Clinical Trials site and NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with ME/CFS at ClinicalTrials.gov, a searchable database of current and past clinical studies and research results.
Donate brain tissue
People with ME/CFS can also support research by registering to be a brain or tissue donor. The availability of tissue from people who had ME/CFS is extremely important for learning how the condition affects the nervous system and other body systems. The NIH NeuroBioBank coordinates storage of donated tissue across the country to advance research. People can contact the Brain Donor Project for more information.
Where can I find more information about ME/CFS?
Information may be available from the following sources: